One Personal Story Goes Public

Posted: Dec. 16, 2011

With a surge of baby boomers hitting retirement age, everyone seems to know someone who has been affected by Alzheimer’s disease. But Bob DeMarco, a former Wall Street entrepreneur turned at-home Alzheimer’s caregiver for his mother, has taken his experience one step further.

The Alzheimer’s Reading Room.

In 2007, DeMarco created the Alzheimer’s Reading Room—a blog about the challenges of being an Alzheimer’s caregiver that offers insight, support and advice on tackling real issues around caregiving. Today, the blog has such a strong following it has become a top source of life news for the Alzheimer’s community. This informative online hub culls the latest information on medical science, wellness and the art of Alzheimer’s caregiving into one trusted resource. Says DeMarco, “Alzheimer’s caregivers are often thrust into their roles with little or no experience, training or education about the disease. As a result, they are often overwhelmed and suffer from feelings of helplessness. As I began acquiring valuable information about how to care for my mother, it occurred to me that I could help the 15 million Alzheimer’s caregivers worldwide by personalizing my own experience and sharing what I had learned.”

From entrepreneur to caregiver.

In 2003, with 20 years of working on Wall Street behind him, DeMarco was running a small software company in Reston, Va. That’s also when his mother, Dorothy, at age 87, began to have health issues. “I knew something was wrong, but I didn’t know what,” DeMarco says. “After spending about 10 days with her, I realized that she needed full-time care. So I quit my job, moved into her 1,250-square-foot condo in Florida with her, and dropped out of the world.” Together, DeMarco and his mother went to see four different doctors, and the first three told them the same thing. “She’s just getting old,” they said, but DeMarco knew it was something more. “Her behavior had changed,” he explains. “She went from being a really nice, socialized person to being mean and negative. She stopped having lunch with her friends and going to the pool, and she scraped her feet on the pavement when she walked. I knew this was more than just old age.” The fourth doctor gave his mother a prescription for Aricept, to slow down memory loss, and later on, Namenda, to help with her worsening dementia. Today, Dotty DeMarco uses a combination therapy, which DeMarco says helps. “She doesn’t always search around for things the way she used to, and she isn’t as antsy. The medications, along with our routine, has improved her behavior and allowed us to live a ‘fuller,’ more productive life.” When DeMarco began taking care of his mother eight years ago, he started sharing his personal experiences on his blog. “Once I realized that most caregivers experience similar problems, I was able to make my blog more useful to my readers,” he says. At first, he got an e-mail here and there, but soon he began receiving e-mails from Alzheimer’s caregivers all over the world. In November 2011, the Alzheimer’s Reading Room had more than 50,000 visitors—and awareness of the site continues to grow.

Dorothy at 95.

“My mother has improved dramatically since I moved here,” says DeMarco. At 95, she still walks without a walker. DeMarco takes his mother to the gym to work out with weights and walk on the treadmill. “She is much more alert and happier now,” he says. ”People living with Alzheimer’s can do a lot more than most people can imagine,” DeMarco says. He and his mother often go to Walmart, where she drives the cart around the store. “She has to use her hands in coordination with her brain and she can drive that cart perfectly,” he says. They also go to an outdoor bar and sit outside and eat, since “bright light helps tremendously.” The staff has gotten to know Dotty DeMarco there and people often come up and talk to her. She can recognize them if she’s known them for a long time, but she rarely remembers names. “She used to be a pretty social lady,” DeMarco says, “and that part of her is still there. She likes to tell stories that are loosely based on facts and her experience. Although she doesn’t always get the facts straight, telling these tall tales is what’s important.” Together, DeMarco and his mother took care of his father for 11 months before he died of brain cancer. “She and I became close friends during that period,” he says. “From that moment, I decided that if something happened to my mother, I was going to take care of her. I didn’t know anything about Alzheimer’s in 2003 or what taking care of her entailed, I just went into action. I don’t see taking care of my mother as a sacrifice. I chose to do this.”

Cure Alzheimer’s Fund.

A few years ago, DeMarco read something about Henry McCance, which led him to Cure Alzheimer’s Fund. That’s when he began following CAF’s progress. “Cure Alzheimer’s Fund gives me hope,” says DeMarco. “Because of my background on Wall Street, I really believe in the venture philanthropy approach, and I think that Rudy Tanzi might just be the guy who hits the ball over the fence. If someone is looking to donate money toward Alzheimer’s research, CAF is the number one place to give, since 100 percent of donations go toward finding a cure.”